Well, it's been a while since I last posted. It's not easy finding time to blog with 4 kids at home, all under the age of 6! But, I have a few quiet moments right now and thought I'd update you.
I took Taylor to the Dr.'s yesterday just for a weight check. It was not a scheduled appt. I just wanted to see how she was doing because we already had to increase her enzymes from 1 to 1 1/2 per feeding. That was awfully quick as she is just 2 mos. old. I called the CF clinic last week to find out more information about her need for enzymes and they reported that she is severely pancreatic insufficient. Most kids with CF do have malabsorption problems and it is because of the mucous that their bodies produce. It blocks the pancreas from releasing the enzymes that helps our bodies digest and process fat. That is why CF kids are typically skinny and even short. (You wouldn't know that looking at Lincoln. PTL!) So, the enzymes I give them before they eat or drink anything with fat in it, helps them to absorb that needed fat. I wish they had a pill I could take to help me NOT absorb the fat! The enzymes must be working because she weighed in at 9 lbs. 4 oz.! I haven't looked that up on a growth chart yet, but I know that's good. We go to Orlando next week for her next CF check up and they will give me print outs of her growth chart by length for age, weight for age and weight for length. I intend to ask the Dietitian (who is wonderful, by the way!) what my other 2 with CF scored with their pancreatic insufficiency because I want to compare them to Taylor. She scored a 6 on a scale where 99 is on the low end. SO...she's on the REALLY low end. It will be helpful to know what the boys are so that I can somewhat gauge how she'll do. Jackson had a few months in his first year when he struggled with weight gain. Lincoln never had that problem, though they did have me start him on formula at about 5 1/2 months because his weight hadn't increase over a 6 week period. He's never had trouble since then and he's a tank now!
Interestingly enough, as much as we hear about the increase in childhood obesity and so on, for a CF child, the bigger the better! I'm sure there is a cut-off point to that theory, but studies show that the CF patients who weigh more, are healthier. Thankfully, so far, Jackson and Lincoln will eat anything that resembles food, so it's been easy. Hopefully Taylor will follow suit! So far, she likes the meals she gets! LOL
Lincoln and Jackson had there CF check up about a month ago. Thankfully, it was while my mom was here and she was able to help me at the Dr.'s. That was a rough day! I've taken them both before by myself, but this time, they were both antsy and a bit hyper. I had forgotten to grab a stroller, so one of us had to hold Lincoln (all 27 lbs. of him!) and he would get squirmy, and fussy. Jackson was just getting into everything and not listening to me. Usually he does pretty well in that area...usually! But, he seemed to know that I was distracted, trying to listen to the doctors, and took advantage of that. From now on, they will have separate appt.'s...on different days! We have to drive to Orlando for the appt.'s, so I kept their appt.'s together for the sake of saving money on gas, but now that Taylor will need to go every 6 weeks (as they do in their first year), I can alternate the boys on her days. The boys go once every 3 months now.
But, the good news is that both boys got a good report from the pulmonologist and dietitian! They also see a social worker, (who we love!) and the CF nurse coordinator. It's usually about 1 1/2-2 hours from start to finish. Sometimes there is blood work or x-rays to be done too.
In fact...that reminds me...(BTW...I'm shocked that I have time to keep writing. Taylor and Lincoln are napping. Carter's at Pre-K and Jackson is playing nicely in his room!)...at Taylor's first appt. in Orlando, they had us do some blood work. I took her to the lab and there were two tech's there. One drew the blood while the other held and switched the viles that collect the blood. They had me hold her in my lap and steady her arm for them. I've been through it a dozen times with my other boys, so it was no big deal. But, they were having trouble getting all the blood they needed and by the time they decided they have to try again, some of the blood they had gotten already clotted. SO...this time, they had the lady hold Taylor, the man drew the blood and I switched the viles for the blood...about 4 or 5 of them. WOW! I've never been asked to do THAT before! It was actually kind of cool and probably better because when I was just watching them do it, I felt myself get a little woozy (sp?). I have been known to faint before when I was having blood drawn and I knew I wasn't getting to that point, but I did make a point to look away and think about other things. However, when I was the one collecting the blood, it didn't phase me a bit! I guess I was more focused on doing it right (as I didn't know what I was doing-though I've seen it done a hundred times!) and so I didn't get lightheaded or woozy (still not sure of the sp!).
I have said for a few years now that by the time my kids graduate high school, I'll have earned my own medical degree! Well, I have phlebotomy 101 down! Haha!!!